This comes as India’s medical and legal fraternity continues to wrangle over the controversial subject and data compiled by the National Crime Records Bureau (NCRB) showing that 26,426 suffering from various ailments, including cancer, AIDS and paralysis, chose to end their lives in 2013. The data also shows an increase in the number of suicides by people with cancer, with most patients losing their will to live following setbacks during diagnosis or relapse.

Though India had amended its Narcotic Drugs and Psychotropic Substances Act (NDPS) as early as in 2014 in order to make opioids available for pain relief and preventing misuse, 29 state governments have not ratified it, and hence not implemented.

Severe under-treatment of pain is reported in more than 150 countries, accounting for about 75 per cent of the world’s population. At least 5 billion people live in countries affected by the crisis of under consumption, and more than 18 million annually die with treatable pain. Global studies show that up to 84 per cent of patients suffer from pain due to cancer, HIV and other conditions.

Access for pain treatment and palliative care is lacking in several countries, mainly in Asia, the Gulf States, Africa and Latin America), while diversion and abuse is prevalent in high consumption countries of North America.

According to the World Health Organization (WHO), governments should strengthen measures, in collaboration with the WHO, to ensure that pharmaceutical companies do not unduly influence policy makers and health professionals with financial interests in opioid production and marketing. They should ensure collaboration between global, regional, and national pain and palliative care organizations to train healthcare providers to prescribe opioids safely for the treatment of pain.

According to the statement, to ensure and restore balance, governments across the world should evaluate their drug control systems for balance, using the WHO Ensuring Balance in National Policies on Controlled Substances guidelines, and follow recommendations for it.

They should implement, in collaboration with WHO, INCB, and UNODC, the recommendations from the WHO Palliative Care Resolution 67/19 and the UNGASS 2016 Outcome Document on the safe and effective use of controlled medicines for pain and palliative care, including enhanced data collection mechanisms throughout the controlled medicines supply chain to better detect diversion in real time.

“Imagine having a tumor so large on your leg that you can no longer walk without excruciating pain. It has caused you to lose your job as a farmer, the only source of livelihood where you live. You have exhausted your meager savings to afford costly chemotherapy and without it, your doctor, whose clinic is 250 miles away, grimly informs you that you will die.” In an article titled “Opiates for All, Opiates for None“, Ramya Sampath, a post-baccalaureate pre-medical student at Harvard University, explores the irony of opioid access – in the US, 91 people die every day due to opioid overdose, whereas on the other side of the globe, in India, less than 1% of the population has access to opiates for pain relief in advanced illness.

India’s restrictive opioid policy originates in the 1985 Narcotic Drugs and Psychotropic Substances Act (NDPS), which was passed after pressure from the United States to join its global cry for its “War on Drugs.” Although an amendment to the NDPS Act passed in 2014, simplifying the licensing process for medical opiate prescription, access to opiates for medical use has not increased dramatically.

“For India’s population,” writes Ramya, “the result has been an epidemic of pain whose remission is still not in sight.”

The recent death of the Parliamentarian and former Minister of State for External Affairs, E. Ahamed, has created disturbance in the Indian Parliament and in the media for several days. It is sad that he died a horrible death, at the age of 78 – it is reported that he was put on ECMO (Extra Corporeal Membrane Oxygenator, an artificial lung that could take over the function of the lungs for several hours) in the middle of the night without the consent of the family that was present but unable to see him. The religious rites could not be performed.

Let us hope that some good will emerge out of all the discussions on the terrible tragedy – that the medical system and the legislators wake up to create sane end of life care protocols and law. And when created, let us also hope that the two will be complementary to each other.

Please watch Extremis, the Oscar-nominated documentary on End of Life Care. (Thank you, Rakesh Menon, for the link).

Pallium India invites you to join a nationwide awareness campaign against torturing incurably ill patients in Indian hospitals in the name of medical treatment even when they deserve compassionate end of life care.

Over the years, Pallium India has been making steady progress in the field of palliative care, providing free pain relief and palliative care to people with life-limiting diseases undergoing unbearable suffering even in remote villages.

We have trained doctors, nurses, volunteers and support staff in pain relief and palliative care and has been tirelessly campaigning to bring about state policies that favour pain relief. A very receptive public, a bunch of self-motivated officials; dedicated staff members, selfless volunteers and generous patrons have supported the cause.

From a difficult-to-pronounce name to a respectable health option for vulnerable and voiceless patients, palliative care has come a long way; though it reaches only 1% of the needy Indians even today.

As part of the Pallium India’s hope to extend its services to the rest of India, a new campaign is being launched, which could make palliative care a familiar name in the world of health care throughout the country. This can only be done with an intensive and expansive campaign involving all palliative care enthusiasts, institutions and professionals.

We are planning a number of programmes, among them a focussed nationwide campaign to promote painless end of life care. We invite volunteers from the medical community and others, retired professionals and students, who wish to be actively involved in our upcoming projects, either contributing ideas or with direct participation.

We are also seriously working on setting up state-wise Pallium Advocacy Groups that will be tasked with building meaningful rapport with hospitals, hospices, non-government organisations and other palliative care units and endeavour to join our campaign to promote pain relief, and to stop administering painful and unnecessary intrusive medical procedures on dying patients. Pallium India intends to form advocacy groups that can make dying as natural and painless an experience as possible.

Those who are interested in joining the campaign, in setting up advocacy groups on behalf of Pallium India in their state or city or coordinating with like-minded institutions and organisations in the field of palliative care and hospice may please write in to national@palliumindia.org. Together, we can promote palliative care as a human right and compulsory option for people with life-limiting diseases.

Do mention your area of interest, expertise and level of participation (city/state, intense campaigning/moderately active or regular volunteer/participation in special campaigns only).

Can you take the initiative to set up an advocacy group in your city/state?

The World Health Organization Executive Board met in Geneva during the week of 23 January to set the agenda for the 70th World Health Assembly (WHA) in May.
Top of the agenda was the election of the new WHO Director General, who will succeed Dr Margaret Chan as leader of the WHO.

Six candidates from Europe, Asia and Africa are in the running: Dr Sania Nishtar, Pakistan’s former health minister; Tedros Adhanom Ghebreyesus, Ethiopia’s foreign affairs minister and former health minister; Dr Philippe Douste-Blazy, a former health and foreign minister of France; Italian Dr Flavia Bustreo, WHO assistant director-general for family, women’s, and children’s health; Dr David Nabarro of Britain, special adviser on Sustainable Development to UN Secretary General Ban Ki-moon; and Dr Miklós Szócska, former Hungarian Minister of Health.

Worldwide Hospice and Palliative Care Alliance (WHPCA) Executive Director, Dr Stephen Connor, attended the meeting, along with International Association for Hospice and Palliative Care (IAHPC) Advocacy Officer, Dr Katherine Pettus, to speak out for palliative care and its inclusion in key WHO documents.

An article published in January 2017 in the Journal of Global Oncology, titled End-of-Life Care and Opioid Use in India: Challenges and Opportunities brings the world’s attention again on the poor access to pain relief in India, despite the amendment of the NDPS Act in 2014. The authors, Aasems Jacob and Aju Mathew from the USA, make an astute analysis of the current situation and point out:

“Integration of palliative care as an academic discipline into the undergraduate medical curriculum and establishment of more postgraduate educational programs in palliative care would greatly improve provision of appropriate pain relief to thousands of patients suffering from cancer and other life-limiting illnesses”.

Two months in a row, UK’s premiere medical journal has analysed the country’s bleak future in healthcare.

Peer-reviewed UK medical journal The Lancet — in an analysis of India’s annual budget — has questioned why healthcare for all citizens is not a priority for the state and the central governments. In an article titled ‘Accounting for the future of health in India’, the journal said that different government agencies in the country need to collaborate to deal with challenges in its healthcare system.

“In India, the challenge is that health has a low status as a popular demand. This has meant that the discussion on universal health coverage (UHC) has remained almost entirely confined to academic and policy circles,” the article said.

What do you think? Poor? Good? Very good? Excellent?

Access to palliative care is notoriously difficult to measure. The world has accepted per capita morphine consumption as theindex.

If you want the good news, access to pain relief in Kerala is at least four times better than the national average.

But wait, there is some bad news to follow. If we take UK and some West European countries as ideal (USA and Canada are notideal as their high consumption is suspected to reflect some diversion of prescription drugs to illicit channels), 150-200mg of morphine (or its equivalent) per year would be optimal. Unfortunately, the consumption in Kerala is still only about one hundredth of that. And, only 1/4th of the global average.

You find it difficult to believe? Yet this is a fact despite the widespread recognition of the Kerala model. Why? The main reason is that hospitals do not use morphine for pain relief following operations, after accidents or even in cancer pain. The essentialmorphine is not available in majority of the hospitals.

Moreover, even in cancer, pain relief reaches too few, too late. There is almost unbelievably high variation in opioid access between various districts of Kerala.

We are glad that the Government of Kerala is considering palliative care as one of its focus areas. Things are bound to improve in the next few years.

Hamsa lay on the bed, his arm propping up his head. His tall frame nearly filled the entire bed. His wife Jasmine stood behind him, her hand resting on his shoulder. Both smiled and nodded as they listened to the young visitors in their hospital room.

Every few months, Hamsa and Jasmine leave their own home and take up residence in this tranquil corner of the Medical Centre campus in Kozhikode, Kerala. After more than a decade of visits, this room at the Institute of Palliative Medicine is like a second home and the doctors, nurses and staff like family members. Volunteers – high school and college-age men and women – from the area’s well-established palliative care network make frequent visits to chat with the couple.

Fifteen years ago, life was very different for Hamsa and Jasmine. They were newly married. Befitting his strength and stature, Hamsa was a karate instructor. But an accidental fall from a bridge left him paraplegic. For years, they visited hospitals and specialists searching for a cure, until realising that his paralysis was permanent. The physical and psychosocial care at the palliative care institute helped them to accept his condition and create a new yet still meaningful life.

A network of compassionate volunteers caring for their terminally ill neighbours is allowing more people in Kerala, India, to end their days at peace and at home.

Thirty years ago a young anaesthetist, newly appointed as head of department at Calicut Medical College Hospital in the Indian state of Kerala, encountered a case that would change his life.

A college professor aged 42 with cancer of the tongue had been referred to him by an oncologist. The man was in severe pain and the anaesthetist, Dr M R Rajagopal, was asked if he could help. He injected the mandibular nerve in the jaw in a procedure known as a nerve block, and told the patient to return in 24 hours. Next day, the pain had almost completely gone and Dr Raj, as he is known, was pleased with his work.

“He asked me when he should come back. I told him there was no need to come back, unless the pain returned. I thought he would be happy I had cured the pain. Instead, he went home and killed himself that night.”

It turned out that the oncologist had avoided explaining to the college professor that his cancer was terminal. Instead he had said he was referring him for further treatment.

“It was only when I told him there was no need to come back that he realised his cancer was incurable. He went home and told his family it was all over.”

Uttarakhand, the land-locked small state in North India, is often called Devbhoomi (Land of the Gods).

In a quest to make the Devbhoomi a really compassionate state, palliative care activists have been trying hard to increase the reach of palliative care, which, at the moment, is confined to tiny pockets.

Under the leadership of the mission director, Dr Neeraj Kharwal IAS, the government officials in health, National Health Mission and Drug Control, got together with palliative care activists on a planning exercise, discussing problems and seeking solutions. There was no doubt in anyone’s mind that palliative care needed to be brought into health care in the state. The inevitable question about addiction potential of morphine did come up, as it must.

The issue was discussed and doubts cleared. Dr Neeraj Kharwal (right) has created an action plan and we are so very hopeful of the future.

Dr Rajagopal, Chairman of Pallium India writes about his visit to Uttarakhand:

The community is deeply involved in palliative care delivery in Kerala. A question that often comes up is, would that be always unique to Kerala? Can it not be replicated elsewhere?

I personally believe that the biggest barrier to involvement of the community in health care is the simple fact that it is a massive change from the way health system functions now. There is a natural resistance to change. Everyone, including administrators, doctors and nurses, wonders how that can happen.

[Dr Aditi Chaturvedi with the President of the Rotary Club, Mr Sumit Nanda]

The simple truth is that it is already happening all around us. We are simply unable to see it and allow it to grow. When I visited Dehradun in Uttarakhand, I saw two examples of this. First, when the rotarians of the city invited palliative care activists to speak to them and to have a discussion. They have already constructed a building; they want help to convert it into a palliative care centre.

As I joined the local team on a home visit, I saw a second example. One of the patients, Beena Devi*, was in Prem Dham, a home for the aged. Beena Devi was in pain from advanced cancer, now partially relieved with morphine. A young woman who was waiting, approached us with a lot of queries – just exactly the kind of question that any family member would ask about a relative undergoing treatment. Would she have more pain? Would this tablet cause any harm? How can we make her better than she is?

The young woman, Shalini*, was a volunteer from the neighbourhood. One who would drop in at Prem Dham just to give companionship and to help the residents. She had already found one answer to the last question: she pointed to the yard where a car was waiting with a young man and an eight-year-old girl. Shalini explained; the girl was her daughter and the young man was a friend who had offered them a ride. They were planning to take Beena Devi out to the coffee shop for a snack and a coffee.

And here we doctors were wondering how to get the community involved! The community is already involved. We only need to take the trouble to engage them and welcome them to our fold.

We may be a young nation, but we need to gear up to meet the needs of the elderly.
While India’s celebrated demographic dividend has for decades underpinned its rapid economic progress, a countervailing force may offset some of the gains from having a relatively young population: rapid ageing at the top end of the scale. This is a cause of deep concern for policymakers as India already has the world’s second largest population of the elderly, defined as those above 60 years of age. As this 104-million-strong cohort continues to expand at an accelerating pace, it will generate enormous socio-economic pressures as the demand for healthcare services and tailored accommodation spikes to historically unprecedented levels.

It is projected that approximately 20% of Indians will be elderly by 2050, marking a dramatic jump from the current 8%.

However, thus far, efforts to develop a regime of health and social care that is attuned to the shifting needs of the population have been insufficient. While more mature economies have created multiple models for elder care, such as universal or widely accessible health insurance, networks of nursing homes, and palliative care specialisations, it is hard to find such systemic developments in India. Experts also caution that as the proportional size of the elderly population expands, there is likely to be a shift in the disease patterns from communicable to non-communicable, which itself calls for re-gearing the health-care system toward “preventive, promotive, curative and rehabilitative aspects of health”.

The word palliative is derived from the Latin palliare, or cloak. Cloaking, or palliative care teams, manage the pain and symptoms suffered by patients diagnosed with life-limiting illnesses. Pain is often a complex synergy of the physical, emotional, spiritual, and social issues a person and family are undergoing, and because few modern medical students are trained to treat such pain and symptoms, doctors feel unprepared to address it. Palliative care teams intentionally address pain and symptoms: they include specially trained doctors, nurses, pharmacists, social workers, and spiritual care advisors who providing care beyond cure, as necessary. Palliative care, not medically assisted dying or euthanasia, is the appropriate response when doctors concede “there is no more we can do.” Provision of palliative care requires policy, though: budgets, training, and accreditation of providers These, in turn requires advocacy to build political support. Without that, the default rational option for long-suffering patients is support for medically assisted dying and euthanasia.

Palliative care has value in itself, though, apart from serving as an ethical foil for the medically assisted dying movement. It heals the deficits of bio-medicine and preserves the profession from harm by completing it, expanding it to its natural limits, restoring it to its original self as holistic practice.

There are two lakh cancer patients in Telangana and Andhra Pradesh of which an estimated 1.5 lakh cancer patients need medical morphine.

The World Health Organisation (WHO) considers medical morphine as the gold standard to combat pain, which is essential to provide end-of-life care for patients struggling with life threatening ailments such as HIV/AIDS and cancer.

Despite its recognition as a proven drug, access to medical morphine continues to remain a challenge for patients from the two Telugu speaking States. Roughly, there are two lakh cancer patients in Telangana and Andhra Pradesh of which an estimated 1.5 lakh cancer patients need medical morphine. However, at present, every year 13,000 patients from TS, AP, a few patients from border towns of Maharashtra and even Odisha have access to it at MNJ Institute of Cancer Research in Hyderabad.

On 26th September 2016, we had informed you all with great sorrow of the demise of our dear friend from Iowa, Professor Jo Eland. A couple of days ago, we received into our bank account Jo’s handsome gift to Pallium India that she had bequeathed in her will.

We cannot find the right words to express how we feel. Happy about the money, of course, which will help so many of our patients and support our activities, but how do we describe the love that came with it, the goodwill, the strength that she infuses into us, and such precious memories she has given us!

Thank you, Inez Dawes (Jo’s sister) and thank you, Dr Ann Broderick. Both of you had to go through a lot of trouble and frustration with the bureaucratic wrangles, even when struggling with your grief.

Dear Jo, we don’t know how to celebrate you. We have no doubt that you would have wanted us to celebrate. Inez suggests an ice cream together. We can see you smiling at the thought!

You are with us, dear friend.

The Indian Association of Palliative Care has been growing from strength to strength. But the growth in the last couple of years has been exponential in many ways – for example, as evidenced by the number of registrations at its annual conference, the IAPCON.

In 2016, the attendance was the largest ever – around 600.

Guess what the number was this year?

Around 1150.

The organizing committee led by Dr Balaji put up an impressive performance. Systematic conduct of scientific sessions, excellent audio-visual support and truly enjoyable but not ostentatious food. Congratulations, Dr Balaji and team.

Michael Minton, Palliative Care doctor and long-term friend of Indian palliative care from Oxford, UK, writes about the 24th Indian Association of Palliative Care conference (IAPCON), 10-12 th February 2017 in Coimbatore:

It has always been a pleasure to attend the annual IAPC conferences over the last 18 years and observe the ever increasing growth and maturity of the event. This year was no exception and the combination of the Coimbatore team led by Dr Balaji and the scientific programme led by Dr Chitra Venkateswaran proved to be a winning partnership. Attention to detail was the order of the day.

The venue was spacious and allowed everyone to have easy access to all the presentations so important when one has parallel sessions. Equally important and achieved was space and visibility for the poster presentations in the appropriate location which was where everyone gathered for refreshments and to network. I make no excuse for highlighting the importance of location as it is critical to provide equality of access to all the components of the conference.

For this reason I could move around the presentations and posters freely although obviously with 3 parallel sessions I could only appreciate a third of the conference at most.

The conference opened with a confident overview of the progress of PC in India from the current president Dr Mary Ann Muckaden. It was outward looking, highlighting achievements, while acknowledging the ever present challenges. There feels to be a forward momentum in the country finally reflecting the hard work of the IAPC over the last 25 years.

The content of the conference similarly was progressive with a wide range of topics from the palliative care needs of people effected by natural disasters e.g. the Nepal earthquake, to the ever-increasing volume of refugees in the world and then the needs of marginalised communities such as the elderly, abused and transgender people.

There was, of course, traditional sessions e.g. symptom control, education, mental health, and psycho-social needs for both children and adults. This included topics that recognised the interests of volunteers. I would love to know how the volunteers evaluate these conferences?

The theme of each parallel session was clearly identified and one that I attended on qualitative research was well planned and exemplified the value of linking the 3 presentations into a coherent progression of knowledge.

One should never underestimate the work involved in preparing a talk or poster especially when it is your first conference. So it is valuable to receive questions and feedback. As there is always a shortage of time in sessions for questions and many feel intimidated by the enormity of the audience, it would be helpful for all presenters to highlight their email addresses and maybe the organisers could consider identifying a space in the refreshment area where the speakers would be following their session to answer questions.

This year there were over a thousand delegates, a tremendous achievement by the organisers, but a challenge for the delegates trying to locate a speaker!

However, as I have mentioned, the posters were very visible and given good promotion by identifying the refreshment sessions as also a “Poster Walk”.

Good ideas like this reflected the planning and thoughtfulness of the organisers. I thoroughly enjoyed my time in Coimbatore. Well done to all those involved.

Empowering bereaved parents is an important aspect of children’s palliative care but is often not focused on.

The 24th International Conference of the Indian Association of Palliative Care opened today in Coimbatore. The opening plenary presentation was given by Prof Mary Ann Muckaden, the President of the Indian Association of Palliative Care and former Chair of the International Children’s Palliative Care Network (ICPCN). Her presentation on Taking Palliative Care Forward challenged us to think about what we need to do and how we can continue to move palliative care forward, both in terms of adult and children’s palliative care and how we need to provide an integrated and comprehensive service for all in need.

“Nurses are the backbone of the society; not only of the health care profession,” said Padmashri Dr. D. D. Patel, winner of the prestigious Dr. B. C.Roy award in 1998.

Food for thought indeed! Are nurses not the ones who look after each one of us and our loved ones, when we need care most in our lives?

During a half hour session at a workshop on palliative care on 24th February, the first day of a three-day Indo-Global submit on head and neck cancer at Jaipur, Dr. Patel chose to speak on the role of nurses – how they are not treated with respect in India and how they are not allowed do their best.

During a whole day devoted to palliative care, there were discussions on various aspects of palliative care including end of life care.

Congratulations to Dr. Anjum Khan Joad and team at BMCHRC- one of Pallium India’s partners in promoting palliative care education in the country.

Yet we squeeze by with, “How are you?” and “I’m fine,” and a thousand other forms of trivial chatter.

We talk about the weather. We talk about work.

We talk about everything else, except the elephant in the room.

– “The Elephant in the Room” by Terry Kettering

There is indeed a large elephant in the room – we have become quite adept at squeezing past it. That large elephant is the burden of disease-related suffering and the room is India.

How does it all look to someone looking in from outside?

Jesse Bossingham is a volunteer from USA. According to his blog, he is “interested in the ways medicine is culturally, spiritually, and institutionally located.” Specifically, he wishes to “study different modes of death and dying around the world.”

As a part of that quest, Jesse spent two weeks at Pallium India this February, observing the way we function, trying to understand the culture and methods. “I had hoped to fade into the background and watch, but it is clear that won’t work.” As he does not understand Malayalam, he has to rely on body language and hasty translations.

In the course of a fortnight, he senses the elephant in the room – huge, clear and ominous. In his blog titled “Talking About the Elephant: Two Weeks at Pallium India“, Jesse writes about his experiences as he shadowed the home visit team, and at the outpatient clinic, and in the inpatient ward. The little things that we do not perceive, that we consider normal, that we take for granted, jump out at us from Jesse’s words. Do read Jesse Bossingham’s blog.

On the 8th of February 2017, Silvia Lefebvre D’Ovidio presented the ‘Religions of the World Charter for Children’s Palliative Care’ to Members of the Scottish Parliament, faith community leaders, child-patients and their families, international palliative care advocates and members of the press, in a ground-breaking initiative promoted by The Edinburgh Medical Missionary Society (EMMS) International.

This is the first time that an important political institution has acknowledged the significant value of this Charter and the role that religions can play in the development and diffusion of palliative care for seriously ill and dying children around the world.

EMMS International commented: “This event represented a historic moment for Scotland’s Parliament; it was an ideal opportunity for MSPs to learn more about this unseen problem and contribute to creating a fairer world where every child receives palliative care should they need it.”

Let us hope that this initiative will be taken as an example and reproduced in other institutions around the world.

Training will be primarily be carried out at MNJIO, Hyderabad. The training aims to provide the skills, knowledge and attitudes required to practice palliative care for children with cancer, HIV and AIDS and other life threatening illnesses. The program will be conducted under the supervision of renowned national and international faculty.

Eligibility

The candidate should have a M.B.B.S degree with permanent registration with medical council and MD/DNB or post graduate diploma in any clinical specialty. Preference will be given to candidates with qualifications in pediatrics and a long-term commitment to palliative care.

In order to apply for a traveling scholarship, applicants must be current members of IAHPC and should not ave received grants from IAHPC in the past 3 years. (If you wish to apply and are not an IAHPC member, you may join by clicking here.)

Preference will be given to applicants:

Living in Lower, Lower-Middle and Upper-Middle income categories as per the World Bank income classification data. See here.

Applicants who have been IAHPC active members for two or more consecutive years.

Actively working in palliative care.

Graduated less than 10 years ago from specialty or medical school

Have an accepted abstract for poster / oral presentation. Proof of acceptance of the poster will be required.

More detailed information about the application process and the online form are available at the IAHPC website here. If you need information on how to apply please contact Genevieve Napier, IAHPC Manager of Programs and Projects at gnapier@iahpc.com.

Receiving the coveted TNG award from Asianet News Channel, the Chairman of Pallium India explained what difference the amount would make to Pallium India’s patients and their families.

The response came almost immediately from Sri K. Madhavan, Managing Director of Asianet, that Pallium India can expect an additional contribution of ₹100,000.

The donation of ₹100,000 has already reached us from Sankaran Nambiar Smaraka Trust, the family trust of Sri Madhavan. It is not only the money that makes us full of gratitude. It is also the goodwill and the message that Sri Madhavan conveys to everyone that the society has a responsibility to lend a hand when a fellow human being suffers.

The money you give will pay for essential free medicines for the poor, for their travel to the clinic or for schooling of their children, or other forms of care. Please give whatever you can. No amount is too small.

Palliative care is about living and celebrating life and should begin much earlier than a during a patient’s last days and weeks of life, palliative care physician Dr. Jose Pereira. “We need to change a culture … that palliative care has to do with death and dying,” Pereira told an information session in Ottawa.

Palliative care is about living, compassion, dignity and person-centred care, he said. Fear and depression associated with sickness and dying can be greatly reduced if palliative care principles are introduced earlier along with other treatments.

If the “p-word” is only introduced when physicians have given up on attempts to cure or control the disease, the anxiety will only increase, he said.

“It’s not a matter of taking away hope; it’s a matter of reframing hope.”

Introducing palliative care earlier in the disease process does not shorten life because its principles — quality of life, patient-centred care, symptom management and spiritual and personal life goals — can be applied while treatments are underway, he said.

“Palliative care and treatments to cure and control are not mutually exclusive. They go hand in hand.”

We welcome international visitors at Pallium India and appreciate the support from our colleagues around the world. We request that you contact us at least 2 weeks prior to your visit so that we can make the necessary arrangements. Sorry; we would discourage “drop-ins” for fear of the impact on patient care.

We have observership programs for interested professionals and students, collaborative visits, and long term placements. Click here for more information. Contact: visitors@palliumindia.org

PARTING SHOT

The small (8 by 8 feet) room has a broken cot, an old television, a few utensils, and an Eastern style toilet.

This is the world of M. Arjun.

Arjun is awake at 8a.m., but he waits, his body resting on its side; he waits for someone from the neighbourhood to come over and set it upright. Once somebody sits him up on the floor, Arjun remains sitting in that same position all day, his back straight and arms and legs half bent in front of his torso, watching television. He cannot flip the channels. If anyone passes by, he calls out to them but sometimes he is stuck watching the same channel all day. This is his day, every day.

Today, he is watching a Telugu news channel. We ask him if he wants it to be changed.

“I am following the developments in the Sasikala story,” he says. “It looks like Palanisami will become chief minister. I am waiting to see what happens in Tamil Nadu.”

To me, Arjun’s life is a life of waiting.

He used to work as a driver. He had a wife. Three years ago, at 32, he developed weakness in his legs and was diagnosed with a rare and incurable condition called limb girdle muscular dystrophy. Doctors told him it would spread to his arms as well.

Soon, everything changed, his life changed. He lost his job. His wife left him a month later. Today he is almost a quadriplegic. The horror is that his mind is unaffected by the disease, making his life a waking nightmare. He has had to watch his body slowly slip into disuse.

“There is no strength in my legs and left arm. But there is still some strength in my right arm. I can’t lift it, but I can press down with my fingers.”

He demonstrates this by pushing buttons on the mobile phone lying in front of him. A call goes to our physiotherapist, Ashok, who is standing nearby. We laugh. Ashok has been seeing him for two years as part of our palliative care rural outreach program.

Disclaimer: Information provided by Pallium India has been collected from different sources and though every effort has been made to ensure that it is up-to-date, its accuracy cannot be assured. Pallium India shall have no liability for any damages, loss, injury, or liability whatsoever suffered as a result of reliance on the information provided.